Wednesday, March 4, 2009

MS and Me: In the Beginning

So, how did Multiple Sclerosis and I become such intimates? Unlike most of my other intimates, it wasn't over some cheap booze in a noisy saloon...

The first Saturday of March 2003 was a bitterly cold day, with temperatures in the teens. What better time, I thought, to take my best buddy Labrador Retriever pal Stella (who died two years ago, and who I still miss every day) for a long walk along the Hudson. Unlike my wife, who's literally allergic to cold, harsh weather doesn't really bother me, and Stella absolutely loved it, so off we went.

My dog friend and I walked north along the concrete jogging/biking path that runs along the very west edge of Manhattan, taking in the stark beauty of the river in winter, for about 1 1/2 miles until we got to 89th St., where we went up to street level and I took some photos of the The Soldiers and Sailors Monument. Stella was her usual goofy self, I was my usual goofy self, and all seemed well.

We started heading back home down Riverside Drive, when I realized that my right knee was kind of buckling backwards with every step I took. At first I thought this was just a result of the cobblestones we were walking on, but then we reached flat ground, and the strange buckling continued. I remember thinking, "OK, this is interesting, what could cause this? Most likely, a brain tumor or Multiple Sclerosis.".

Honestly, within 30 seconds of noticing I was limping, the possibility of MS was forefront in my mind. Can't really explain why, other than a lifetime of finely hewn hypochondria, which I can now proudly say was not a sign of neuroses, but of prescience...

Stella and I walked home, and my limp grew worse. When we got back to the apartment, I rested for a while, and everything returned to normal. Over the next several weeks, though, my knee would start buckling whenever I walked a significant distance, and that distance seemed to get shorter with every incident. I also noticed that my right arm was feeling strangely tired, kind of like I had just pitched nine innings.

After three or four weeks, I went to my primary care doctor, who assured me that my symptoms were most likely nothing, but he ordered an MRI just to be on the safe side.

When I returned for a follow-up visit two weeks later, my condition was the same, if not a little worse, and the doctor hadn't yet read the radiology report from my MRI. He started reading it out loud in front of me, as if he were certain there would be nothing significant in the report. He stopped when he reached the words "a region of probable demyelination". He looked at me over the pages of the report, and I said "Multiple Sclerosis". He looked a little ashen, and said, "Yes, probably...".

And so it began.

Almost exactly 6 years later, my right arm and leg are pretty much useless, both very weak and spastic. My left side, which was untouched by the disease for the first five or so years of my illness, is now starting to show significant symptoms as well, in the form of weakness, numbness, and tingling.

During these last six years, I've learned a lot, not only about medicine and medical research, but most strikingly, about myself and the things that matter most in this finite life. I look back on my healthy years and think about all of the wasted time spent being depressed or angry or anxious or distracted or preoccupied over things that, in the harsh light of real trouble, turn out to be of absurdly little importance.

More on the experiences and knowledge gained over the last six years in later posts...

"I look back on my healthy years and think about all of the wasted time spent being depressed or angry or anxious or distracted or preoccupied over things that, in the harsh light of real trouble, turn out to be of absurdly little importance."

Truer words have never been spoken. My wife loves to dance. I always HATED it. Even in college I would get friends to dance with her. Now 23 years later (at age 45), I wish I had danced instead of worrying about being a white boy with no rhythm.

I feel better already! My PPMS showed up in almost exactly the same way -- after a run my knee started buckling. But I didn't figure out it was MS until I was diagnosed 4 years later in 2005. I love your blog.

Hey Marc! I don't have a blog so I have to post anonymously. My name is Melanie and I work at the Buffalo Neuroimaging and Analysis Center. I really love your blog, and although I am just an intern helping with the Premise study, I recommend your blog to everyone I know that has been affected by MS.

You are an extremely talented writer and I think it's awesome that you're creating a positive perspective for other MS patients to identify with (whether you meant to or not... )

Also, I think it's awesome that Buffalo is mentioned here. Not only does it make me feel really cool, but I love telling people where I work!

Marc, I've been in fits laughing at your video on a journey to find Audrey Hepburn statue!! My mum told me to get out of the living room...... Fantastic posts, best name EVER!!! It helps to know others with MS can remain upbeat through all of the crap this condition throws at us.

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Regretfully, due to the high volume of e-mail received and the realities of living with progressive MS, I'll no longer be able to respond to all e-mails sent. I do read each note, and will do my best to answer as many messages as I can.

About Me

I'm Marc, a 53-year-old male, living in New York City with my lovely and wonderful wife Karen. Diagnosed with Primary Progressive Multiple Sclerosis in March of 2003, I now require a wheelchair to get around the city. I like to drive the wheelchair at full speed, thus the moniker "Wheelchair Kamikaze". I've managed to rig a camera to my chair, so I'm able to take videos and still photos from the unique vantage point of a wheelchair, which I intend to post here.
Before getting sick, I was the Director of DVD Production for one of the major international music companies. Yes, I was once a member of the Evil Empire...
Prior to my enlistment in the Evil Empire, I worked as a video producer and editor.
I grew up in New York City, and spent the 1980s in Boston (college and postcollege rock 'n roll craziness). During the 1990s, I lived in South Florida, until I woke up one morning and realized I was living in South Florida, came to my senses, and moved back to New York.
I hope you like my blog...